Ups and Downs

Here is an overview of Morgan’s ANC (absolute neutrophil count) with the Neupogen injections.  For those of you that just tuned in, neutrophils are the most prominent white blood cells that serve as the front line of defense against bacteria.  Severe neutropenia is 0-500, 500-1000 is moderate and 1000-1500 is mild.  A child under 2 has a normal count when it is over 1500.  Neupogen is a drug that causes her bone marrow to work in overdrive to make more neutrophils to compensate for the ones that her antibodies are killing off.  Morgan gets injections on Monday, Wednesdays and Friday evenings and we do bloodwork every Friday morning.  Dr. Grayson wants to keep her counts between 1000-1500.  Here are her counts from the first weeks of Neupogen:

Friday before Neupogen - 220

Week 1 – 1581

Week 2 – 2500

Week 3 – 300  (last Friday)

Wednesday morning of this past week – 600 and she was very irritable

Wednesday evening– started new vial of Neupogen   

Thursday – great mood and very content!

Friday(yesterday) – 4500 and very irritable

Needless to say, we were very discouraged on Monday when we found out her ANC was only 300.  We think she had a little stomach bug which could have lowered it.  She was really irritable Wednesday morning so I took her to the pediatrician to have her checked out and to have bloodwork done.  She checked out fine and her ANC was 600 something.  Dr. Grayson said this isn’t where we want it but fortunately it is moving in the right direction. 

I was so encouraged when she was in a wonderful mood this Thursday.  However, she was in a horrible mood on Friday so I thought her ANC had dropped again.  We were very happy to hear last night that it was actually very high at 4500!!!  This is actually too high but at least we know the Neupogen is working.  The high number also explains her recent irritability because Neupogen can cause bone pain and headaches.  We are giving her motrin to help with this.

Obviously that is an extreme jump from 600 on Wednesday to 4500 on Friday and we think we know why.  I found a new friend in College Station whose toddler has tested positive for AIN also.  Actually, she found me through the Baby Center neutropenia board.  It is really a God thing that we connected.  We had dinner on Tuesday and are going to get together once a week.  Kristy is very well-read and has a good understanding about the latest research and challenges concerning kids with Autoimmune Neutropenia.  She told me that there is some controversy over whether to use the 1ml vials of Neupogen more than once.  The nurse at the hematologist’s office told us to use the 1ml vials over and over until each is gone and showed us how to use it “sterilely”.  However, Kristy showed me how the company clearly states that they are “one-time use” vials since they contain no preservatives.  My question was then if the reasoning was to prevent bacteria from entering the vial or because the Neupogen becomes less effective.  I called the same nurse the next day and she assured me it was only for sanity reasons and said the way she showed us to administer the medicine would keep things sterile.  

However, I talked to Dr. Grayson that evening who said that using the vial multiple times could actually decrease the effectiveness of the drug.  For Monday’s dose we were at the end of a vial, so we started a new vial on Wednesday and that explains the high number on Friday.  Therefore, the nurse was incorrect which caused several of Morgan’s injections to be ineffective or not as effective.  If Kristy hadn’t pointed that out to us, we would have kept wondering why her numbers were going up and down for no reason!  I’m so grateful to her because I would have been such a basket case.

The drug is very expensive which is why wasting the rest of a vial is an issue for a lot of people, especially for those without insurance.  In Morgan’s case, she only gets 0.17 of a 1ml vial.  A box of 12 vials (4 weeks worth using 3 a week) was $3400.  That comes to $283 an injection.  Fortunately, our insurance is paying most and we’ll of course do whatever we need to for our baby girl to be healthy and happy.

It is SOOO good to know that the Neupogen is doing its job.  We go to Temple on Tuesday for our monthly appointment.  He will probably tell us to lower her dosage or at least that is what we are hoping.  J  He also told us that as long as we fill up three syringes at once on Mondays, they will be effective for Wednesday and Friday’s dose.  I’m not completely sold on that idea since the Neupogen company clearly gives other instructions, but I will ask him more on Tuesday.

Jeremy just said to me how far we have come in the last few months.  We figured out why she was sick all the time.  We got a diagnosis.  We found an effective treatment and as of a few weeks ago.  Morgan is sleeping through the night. And more importantly, we know that she will spontaneously go into remission.  We know that this will come to an end.  God has been so faithful to assure me through this process – through His Word, through people, through songs, etc.  He is so faithful and He has brought us a long way.  One thing is for sure, our little girl is so special and he has some amazing plans ahead for our Morgan!  Please pray she goes into remission soon, and that we find the right dosage so she feels better.

Reflecting Back

Morgan had bloodwork done on Friday to see how well her body is responding to the Neupogen injections.  In spite of getting poked twice, she did a great job!  I think she is getting used to all the blood draws.  We got a call from the hematologist Friday evening.  Dr. Grayson said he “was very happy to say that her neutrophil level is 1580 and her overall white blood count is 9000.”  We were ecstatic to hear that especially since it was 0 a couple weeks prior.  This is exactly where he wants her neutrophil level and so we are going to stick to the same dosage for now.  She will do blood tests weekly as we watch what her levels are doing.  Hopefully in a couple more weeks , we can start having playdates again. 

This whole process has been somewhat isolating.  We haven’t been to church regularly in the last year because Morgan was getting sick every time she went to the nursery.  This is a stark contrast to my life when I was pregnant since I worked full-time at our church.  Also, we haven’t had playdates with friends in a couple months.   I think God has done that partly to force me to draw closer to Him.  I’m just sorry that my little extrovert can’t see her friends these days.   I look back and know now why I didn’t feel comfortable taking her certain places or why I have been obsessive about germs.  That’s the kind of mother Morgan needed and God is so faithful to speak to us through our “motherly instincts”.   It’s nice to now understand why she was always getting sick and that I wasn’t just an “overprotective first time mom” as someone told me.  I can even see how the milk allergy and reflux played into this because I think it was good preparation for the three of us.  Now, that I look back, I can say to God, “Oh, I get it now.”  My heart longs to serve Him in some capacity but I understand now why God has wanted me to focus all my time and energy on Morgan.  God is doing some exciting things and He has some really big plans for my little girl!


Morgan has had more energy than ever.  Her favorite activity is chasing the dogs with her lawnmower.  She starts laughing so hard she can't stand up straight.  Today she put on one of her shoes by herself and decided to walk around with one shoe on for a while.  I found out I have some thyroid issues last week, so hopefully the medicine kicks in and I can have more energy to keep up with her.  She says several words but also has her own language too.  We tell her "I love you" often and Morgan says I love you by saying "AYY-yah".  It's pretty funny and there is no doubt that is what she means.  She has also started to sleep a lot less and her nap has now moved to 3pm instead of noon.  She seems much more contented now that she feels better.

From 6 past blood draws from her old pediatrician, I calculated the ANC’s.  In August of 2011, she had an ANC  of 2500 which is outstanding.  Then, it kind of goes downhill from there.  I think she has had this since at least October of last year.  If that is the case, she has already had it 8 months.  So, I am starting to pray that Morgan goes into remission early.  I guess we would know by the weekly blood draw counts and another antibody test when the time comes.  I have tried to network with other moms of kids with Autoimmune Neutropenia.  There are about 14 active AIN moms on a Babycenter board I found and 3 of them have kids with anc’s low enough to be on Neupogen regularly.  Hopefully, I hear back from them as I have questions like “Will she get sick as often as she did before or will it just not be as severe or both?”  I guess I am interested to see what our new “normal” will be in a few weeks.   God has brought us a long way in a short time period and I’m sure He will continue to do the same.

During the past month, I don’t think I have ever heard the Lord speak more clearly to me.  It has been amazing how God has communicated to me very specifically through His Word. During the week we were waiting for her diagnosis, I literally felt as though God had a protective spotlight of his love and peace on me at all times.  I’ve spent years in seminary classes but I have learned more about His character in the last few weeks than any time in my life.  I could spatter off a whole plethora of verses that God has emphasized to me but the ones that are heaviest on my heart right now are 2 Cor. 4:16-18. “ Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.  For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.”